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Wednesday, 25 April 2012

We're on day 21 of being without Carter's talker. As each day passes I appreciate more and more how important the device has become to Carter and the role it has played in helping him to communicate effectively.

Unfortunately, the talker got dropped on the floor at school several weeks ago and ever since then the battery won't charge. When plugged in it will function but it will not charge. Carter used it for a little while, powering it up with an extension cord, but eventually we had to send it off to be repaired. My active boy needs his device to be portable and being limited by an extension cord was not ideal.

This is the first problem we've encountered with Carter's talker since he got it just over a year ago. What do you do with a high tech voice output device when it stops working? Well, the device was manufactured in the U.S. and the Canadian distributor is located in British Columbia so we were surprised to find out that it would go to northern Ontario for repair. The 'local' technician worked on it to no avail and last week it was shipped south of the border, back to the manufacturer.

Meanwhile, here at home...Carter is back to relying on sign language to express himself. The more he signs, the more I am reminded of how hugely limiting sign language is for him. He has so much he wants to contribute but can't because he doesn't have enough language without his talker. He has very few verbs in his sign language repertoire so he mostly ends up labelling everything around him by name or by colour (truck...dog...red...Mom...etc).

I play my role as Detective Mom and do my best to figure out what he's trying to say and then I fill in the blanks. He wants his thoughts articulated so I provide a running commentary of his repetitive signing. I become his translator, and his voice.

It takes us back to a time before Carter had his talker. He would string two or three signs together and maybe the odd gesture and the rest was intuition on my part. I would watch Carter's signs and gestures, study the situation and then do my best to convey what I thought was Carter's message. I was probably about 90% accurate most of the time which was both good and bad. Good because Carter had someone he could rely on to figure out his wants and needs. Bad because I couldn't be with him all the time. His communication skills needed to evolve.

Hence the talker. With his talker Carter is able to put several words together and express himself in a more meaningful way. He comments on things, he makes observations, he asks questions, he even tells jokes. The jokes are preprogrammed into his talker and he doesn't always understand the punchline but he loves it when he can make someone laugh -- in fact, he can't get enough of that. He can now engage and connect with others which is something he so badly wanted, andneeded to do.

I don't want to paint it as a perfect picture. It's not like Carter speaks like a typical 8 year old boy with the exception that his voice comes from a computer box. He is still learning the conventions of language -- learning how to put it all together. He doesn't form complete sentences and he often mixes up the order in which the words should go. He leaves a lot of words out of his utterances so some interpreting is still necessary.

Add to that the fact that Carter can be quite shy. Depending on the situation and who he's with, he may choose not to use his talker. There are still some challenges to overcome but we're miles ahead of where we were without the device.

We have watched Carter's excitement level grow in direct correlation with the development of his language skills. His talker has allowed him to demonstrate the complexity of his thoughts and he seems pleased to finally be able to do more than just label things in his environment. He literally loves his talker (he actually hugs and kisses the darn thing!).

We're waiting for a 'loaner' device to be delivered from the distributor out west and I must admit, I'm getting a bit impatient with the wait. I'm ready to go back to being Carter's communication partner instead of his translator. And Carter? Well, good old Carter is usually fairly content with whatever is going on but I'm told he's showing signs of frustration at school. He misses his talker too.

Sunday, 15 April 2012

I was searching through one of my many binders full of Carter's paperwork (medical reports, school info, therapy info, etc.) and I came across an article I wrote when Carter was a newborn - back when my husband and I thought that we were simply dealing with the fact that Carter was born with a cleft palate and Pierre Robin Sequence. At that point we had no idea of the other challenges that lay ahead.

The article speaks of the struggles Carter experienced just weeks after he was born. And it speaks of the many 'firsts' I experienced as Carter's mom, including the first of many times:

I felt powerless and unable to make things better for Carter.

I put my faith in professionals to help Carter where I could not

I followed a very strong maternal instinct

I was forced to adapt to a difficult situation

I encountered something beyond the norm of what I thought I would experience as a parent

I struggled through a hospital visit with Carter

Here is my (slightly edited) piece from the Parent Perspective Column of the Chedoke Cleft Lip and Palate Team Newsletter, January 2004:

Our son Carter was born on September 8, 2003 weighing 7 lbs. 12 oz. We were so excited that he was finally here. With the help of the Cleft Lip and Palate Team we began educating ourselves about Carter's condition. He was born with Pierre Robin Sequence as well as a cleft palate. This condition often causes breathing challenges. The chin is very small, which means the tongue is crowded inside the mouth and it blocks the airway. Using special bottles, we attempted to feed Carter at home but he did not gain weight well, even though he appeared to be taking his formula regularly.

At the age of 5 weeks, the pediatrician decided to admit Carter to McMaster Children's Hospital. She was concerned about his weight and his breathing. Carter had been working hard to coordinate his eating and his breathing and was therefore burning calories faster than he was able to take them in. When the staff at McMaster intervened we saw a major turn around in Carter's health. He needed a little boost and that is exactly what he got. He had a lot of catching up to do with weight gain and the ENT (ear, nose and throat) doctor set him up to do just that. A nasopharyngeal tube was put in Carter's one nostril to help him breath. The tube goes through the nostril and sits at the back of the throat keeping the airway open at all times. The tongue can no longer obstruct the entire airway, as the tube will always allow air to pass through. With the nasopharyngeal tube in place, bottle feeding creates a greater risk of aspirating spit up due to the positioning of the tube in the throat. Therefore, Carter required a nasogastric tube in his other nostril through which he was fed.

What an overwhelming few days we had when Carter was first admitted to the hospital. I will never forget the sick feeling in the pit of my stomach when the ENT doctor told us that Carter could require the tubes for up to 4 months meaning he could be in the hospital for that length of time as well. This was not what I wanted to hear. I was reassured when the nurses made it clear that lots of children go home with tubes and sometimes much more.The challenge to train for Carter's return home began the day after he was admitted. Getting Carter home became our goal from the moment we found out it was a possibility. We wanted our family to be together in a natural family setting.

I was very intimidated watching the nurses work with Carter. My first thought was that we wouldn't be able to handle it - we were not doctors or nurses. How would we ever be able to cope with this situation at home? We took it one step at a time and during Carter's stay at the hospital my husband and I had lots of opportunities to practise and become competent handling Carter's needs.Three weeks after being admitted, Carter was healthy enough to return home and my husband and I were knowledgeable enough to take care of him. We had taken an infant CPR course. And we were fully trained in how to change Carter's nasopharyngeal tube, how to suction it when necessary and how to feed Carter using the nasogastric tube. Armed with several tubes, and what seemed like a pharmacy full of other medical supplies, we headed home.People always say that your lives are forever changed after you have a child. Our lives were certainly changed in ways that we never would have anticipated. Before Carter was born I would not have pictured myself as the type of person able to handle changing a tube in my son's nose or checking the placement of a feeding tube in his stomach by using a stethoscope. Nonetheless, my husband and I dealt with Carter's medical needs. They became second nature to us.

It has been ten weeks since Carter spent time at McMaster and I am thrilled to say that we made it! Carter is bottle feeding and he has grown significantly. He is now strong enough to handle breathing without the nasopharyngeal tube and has been doing so for four weeks. Carter's situation was indeed a challenge but it is one that we will cherish in our memories as part of our son's unique beginning in life.

Eight years later, I still cherish the memories of those first hurdles we overcame with Carter. Having dealt with a myriad of other unexpected challenges with him I find that I also look back with wonder and with appreciation. I have gained a different perspective on a lot of things in life and I have learned to appreciate them thanks to Carter. I certainly appreciate my boy for all he has overcome and for all he continues to deal with.

Saturday, 7 April 2012

I had to laugh the other day when my son, Jack told me that he marvels at my cooking. What a compliment! Especially when more often than not I feel like a novice in the kitchen.

I'm certain the term, 'marvel' comes from Jack's teacher. I've heard several things from my seven year old that haven't come from home. It makes me marvelat all that he takes in, remembers, and repeats in relevant, meaningful ways.

In the spirit of Jack's (or rather Jack's teacher's) new phrase I thought I would list some of the things that I marvel at with regards to my three kids.

I marvel at...

...how different each of my children are.

I marvel at...

...the many things my kids have to offer.

Taylor reminds me daily that being less structured and having a free-spirit can spice things up. There's never a dull moment with Taylor around!

Jack's sense of humour often lightens the mood when things get tense. He keeps everyone smiling - or at least he tries.

And
Carter, well...Carter has opened up a whole new world for me. One that includes many things I
would not have experienced had he not been born with a developmental
disability. He has made me appreciate the little things that we so often
take for granted.

I marvel at...

...Carter's easy-going disposition....his patience and minimal frustration in light of the fact that he is non-verbal. I can't imagine many others who would be as agreeable if they couldn't plainly convey their wants and needs. These qualities were evident during our recent ski trip to Vermont.

I marvel at...

...Jack's thoughtfulness and sensitivity. A few weeks back he came home from school and told me about a movie he'd seen. There was a boy in the movie that had lost his legs and was in a wheelchair. Jack was quite emotional and very concerned about the boy. Full of questions, Jack needed reassurance that the boy would be okay without legs. It took a lengthy discussion before the subject came to a close and even then Jack left the conversation feeling distressed that some people have to struggle in life to overcome undeserved challenges. Carter is a lucky guy to have such a sensitive brother.

And finally...

I marvel at...

...Taylor's pure exhilaration over things that she loves. I marvel at her exuberance and her lack of inhibitions.
We moved to the greater Toronto area recently and are now living in an area much more culturally diverse than where we used to live.
Taylor, Jack and I were approaching the check-out with our groceries one afternoon when I heard my daughter exclaim, "Jack! Look! A genie!" (keep in mind that at five years old Taylor is very much into the world of fairy tales and princesses - especially Disney princesses). When she saw a gentleman wearing a turban she equated him to a character she was familiar with, not to someone of a new culture that she knew nothing about. She was so excited that she blurted out the first thing that entered her mind.
I must admit, with Taylor some days it isn't so much marvelling as it is 'shushing'. After the shushing comes damage control. Thankfully the gentleman did not hear what Taylor said and I was able to quietly rein her in until we got to the car where I explained that genies are found in fairy tales, not at the local grocery store.